What treatment options should I consider for widespread leiomyosarcoma at 44?

This diagnosis must feel overwhelming, especially when facing such difficult treatment decisions at a young age. Many people in this community have wrestled with similar choices about balancing quality of life with treatment intensity, and connecting with others who understand this journey can provide valuable perspective. Consider discussing all available options with your oncology team, including clinical trials that might be appropriate for your situation, and don't hesitate to seek a second opinion if it would help you feel more confident in your decision-making.

While exploring all treatment options is definitely important, I'd also encourage you to ask your doctors specifically about your individual prognosis and what "palliative" means in your case. I’d also suggest finding a support group in your area where you can ask more specific questions from people who have been where you are or are in a similar situation. Sending positive energy to you. 🙏🏼❤️🙏🏼

I underwent abdominal surgery in Feb 2019 to remove a tumor. I woke up several days later on a ventilator. To this day, I never asked how long I was on the vent. Bc it doesn't matter..What matters is I woke up..Whereas, I was told that the tumor had backed into my right kidney and adrenal gland. Which were removed, and my IVC had wrapped around it. Which had to be cut and grafted..Also, I was administered 8 pints of blood..All of this was revealed to me when I woke up from the ventilator. Tests revealed the tumor was benign. However, in August, I began experiencing severe pain in my left hip Joint. Which revealed a tumor. I underwent a biopsy and cryoablation. Afterwards, I was diagnosed with leiomyosarcoma. In Feb 2020, I experience severe pain in my right hip joint . Which revealed a tumor in the exact place the tumor was located on the left hip joint. I underwent a biopsy, and microwaveablation. It was cancerous, as well.. Afterwards, I took several rounds of radiation off and on bc tumors were revealed in bilateral shoulders, stomach, lungs, the other kidney, and back. I was told the tumors were too small to treat with chemo. In 2022, I went to MD Anderson to get a second opinion. Bc they have an area for various sarcoma patients. At first, I was administered votrin. It helped but I had a lot of side effects. Afterwards, I was administered 6 rounds of chemo. The tumors shrunk for a year and started growing again. In 2023, I underwent 5 rounds of radiosurgery . The tumors shrunk for a year but started growing again. In 2025 I underwent 5 rounds of chemo. Which shrunk the tumors. But they started growing again. Therefore, I started chemo again in Nov 2025 of trabectedin. It's administered for 24 hrs, once every three weeks. I receive it on a Tuesday and go back on a Wednesday to have the pump removed. The side effects are not too bad but I take steroids three - four days after treatments. Which helps subside the side effects. I am told I will have to take chemo indefinitely. But I clam in Jesus name - through God's grace and mercy I am going to get better and won't need any more treatmentsI. I claim the same for you all!! I live over 400 miles from MD Anderson in Houston, TX. However, I go every three months for lab, images, and a treatment plan. Then, my Oncologist here works closely with the Dr there and carries out the treatment plan. I have undergone doxyrubicin but it was too strong for me..Trabectedin is working well and it doesn't take your hair out. It wouldn't matter if it did bc I have lost my hair numerous times during other treatments. It doesn't matter bc I have gotten accustomed to wearing wigs and they're so convenient. I take OxyCodone 10-335 for pain and promethazine for nausea. I was taking morphine, as well but my pain is managed by the oxy only, now. Also, I take 1 Claritin daily for 5-6 days after treatments. It helps with bone pain. I dismissed it when my Dr mentioned it but it does work.. Watch your carbs and sugar intake bc I'm told that cancer cells feed off of sugar..Also, I take an XGeva Injection - once every 4 weeks to strengthen my bones. I am sorry you all are going through this. But your faith, positive attitude, research, ask a lot of questions and surround yourself with positive people will make this journey easier..Drs can only guess of a life expectancy. But only God knows that. Give God the glory for working through your Drs. We're going to defeat this - it will not defeat us . Ask your Drs. about trials and continue to inform them that you choose life and will beat the odds..This is only a minor setback to add to your testimony. In order, to encourage others. I wish you all the best and uplifted in prayers!!🙏🙏❤️❤️